In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!

MY BIRTHDAY!

Tuesday, 5 July 2011

Dystonia, Blepharitis, Vertigo...& MS!

It's fair to say that I'm a little fed up at the moment :(

Over the past month I have been told that I'm dealing with Dystonia, Blepharitis & Vertigo & that is on top of the MS! I'd never heard of the first two!!

OK, so Dystonia is "principally a problem caused by faulty signals being sent from the brain to muscles, which results in ‘co-contraction’ (opposing muscles working together. For example, when straightening your arm, the muscles that bend it and the muscles that straighten it, would work at the same time)" www.dystonia.org.uk

Blepharitis is an eye condition that affects the eyelids. The symptoms include

"itchy, sore, red eyelids

eyelids that stick together and may make it difficult to open your eyes when you wake up

My eyelashes in my left eye point off to the left & my eyes water a lot. They are very sticky in the mornings and water a lot.

Vertigo is not being afraid of heights, although that is one definition!!

"Vertigo is the sensation that you or the environment around you is moving or spinning. It is commonly caused by a problem with the balance mechanisms within the inner ear.If you have vertigo, you may experience the sensation of movement even when you are standing completely still."

Blepharitis - I had an appointment with an eye specialist. She was looking into they way my eyes move & whether they move together. She was quite happy with the way my eyes were, but while she was looking at them she pointed out that they were very puffy & that I had dry skin under my left eye. I had, what seemed to me, a very dark patch under my left eye - I just assumed it was very bad bags under my eyes!! She suggested that I go & see my GP & get them to check it out. In the meantime she was fairly happy with my eyes but will see me again in a couple of months just to check again. I also had a scan while I was there, this was of my optic nerves. The results of these get sent to the eye consultant at Torbay hospital, so I won't get these until the next time I see him! I made an appointment with a GP at our surgery & told him what had happened & what I'd been told by the eye specialist. It didn't take him long to say that he felt sure I had a condition called Blepharitis. It is a chronic condition, which in severe cases can be helped with antibiotics but my case wasn't in need of that. The doctor printed off some information about blepharitis, which included information about the condition, causes etc & also what to do to help manage it. Basically the best way to manage it is to have good eye hygiene. Clean your eyes a couple of times a day & the best thing to use is baby shampoo! I have started doing this and I must admit that my eyes have started to improve. It's inconvenient but not a major problem & is better than having gunky eyes!!

Vertigo - back in October of last year, I had my first experience of vertigo. I couldn't stand up without feeling like I was going to fall to the left. I felt very dizzy & quite sick. I couldn't walk without falling over. It was a really horrid experience & at that point I had no idea what was going on. It was a Sunday so we went to the local hospital to the doctor on call. He explained that it was vertigo. He said there was no treatment as such, just recommended bed rest for a few days until I felt better. This definitely helped & after a few days it calmed down & I was back to "normal"! So I kind of knew what I was dealing with when one Friday I started feeling a bit dizzy again. I've been having a few issues with my middle ear canal. My left ear becomes very muffled & I can't hear properly from it. This had started again on the Friday morning & by the afternoon I was feeling quite poorly. But this was nothing compared to what was going to happen! I went to bed on the Friday & woke up Saturday feeling much better - to my great relief! I didn't think any more about it........until Sunday morning! I woke up on the Sunday morning & while I was lying in bed I was feeling fine....just my usual morning aches, pains & foggy brain!! I got up & went to the bathroom, which is about 10 footsteps away. I got there & thought that I felt a little bit strange. I finished & went back to the bedroom & was feeling worse. I sat on the edge of the bed & wasn't sure what to do. The room was spinning, really badly. I couldn't focus on anything & I was starting to feel quite sick. I tried to lie down, I just wanted to go back to sleep so that I didn't have to deal with it. But I couldn't lie down without the room spinning too. I sat back up & felt really very sick. I had to get to the bathroom & sure enough, I was sick. I thought that might help & I made my way back to the bed. I sat on the edge again & was trying to compose myself. But I was still feeling very dizzy & very nauseous. So much so that I had to dash to the bathroom again. This time all I could do was retch. I wasn't actually bringing anything up. I have to admit that at this point I was very distressed & really scared. I'd never felt so poorly before. Eventually after this had gone on for a while, I managed to get myself in bed, I could lie down now & I went off to sleep for a few hours. When I woke up later I was feeling a bit foggy but a whole lot better than I had been earlier in the day. I knew it had been vertigo. It was just a couple of days later when I saw the eye specialist, so I asked her if it could have been to do with my eyes. She asked whether I had any ear problems & when I explained about my middle ear, she was then convinced that that had been the cause, not my eyes. So when I went to see the GP about my eyes I told him about the vertigo. He confirmed that it was vertigo & also agreed that the middle ear congestion was the probable cause. Although he did point out that vertigo can be linked to MS too. He gave me some tablets to help with the dizziness & nausea & I have to say that they have been a god send! They are called Buccastem.

So within the space of a few days I was dealing with another couple of issues. I tried not to let it get me down, but I was disappointed. Just when I felt that I was getting on top of the issues that I was having with my MS - the pain etc, something else comes along to knock you back - but hey that's life altogether isn't it?!

Now on to the Dystonia! Over the past months I have been having issues with my right hand. More so than usual & a lot of it has been at night. My fingers have been going into spasms. To start with it was just my little finger & the one next to it. The pain would wake me up several times a night. My fingers & hand were feeling numb but with the painful sensations I have felt since my symptoms first started in 2002. Then I would get this horrible sensation that would feel like my hand had a huge boxing glove on it. It was as though the hand itself was twice the size it actually is. This was happening most nights & would disturb my sleep two or three times a night. It had started in those two fingers but eventually it was affecting all the fingers on my right hand. They would spasm & the hand would close up. I couldn't open it out or do anything with it until the morning when, eventually, my hand would relax. This was becoming a problem as it was very painful, it was constantly disturbing my sleep & it was actually a bit scary at times. I was also having other problems with my hand. I would get odd twitches in the fingers & they would move of their own accord in spasms. I was also having issues writing. I could write OK but not for any length of time, it was almost like I was getting writers cramp but I only had to write a few sentences for it to start hurting. I saw my MS nurse when I went for my Tysabri infusion one time, so I told her what had been going on. She feared that because of the boxing glove sensation being a new symptom that I was having a relapse, but because I don't respond to steroids, there was nothing much I could do. She did wonder whether a splint might help keep my hand open at night, so she suggested that I call my OT & ask. I did that & my OT referred me to the splint clinic. I eventually got an appointment through but it was for the spasticity clinic not the splint one! I had the appointment with the clinic last week & it was a very informative appointment. My referral had gone through to them because the splint clinic felt that because of the MS there was more chance of it being spasticity related. I went through all that had been happening & explained all the issues I have. This included the spasms I get in my legs in the evenings, but my main priority at this point was my hands! She explained to me that it sounded like I have Dystonia rather than spasticity. www.dystonia.org.uk Spasticity is where the spasms & flickers are constant. Happening all the time, where as dystonia the symptoms are more random & they come & go. (I think I've got that right!!)

She examined my hands & arms & it was quite interesting, she spotted that on the top of my right hand, by the knuckle of my little finger, there is quite a lot of muscle wasting. I have a lot of problems with that little finger & it looks as though that could be the reason. She felt that a hard splint wouldn't be much help as it would be too uncomfortable. But there were other options. She found a hand grip for me that I could take away and try. You put your hand through it & there is a thumb hole. It then Velcro's across the top of your hand. It isn't very big & is made of a fleece type material. The suggestion was that I wear it overnight and if my fingers went into spasm, they would rest against the grip & hopefully not go into a full spasm. I have tried this & so far so good! It's not perfect but it definitely helps!The other suggestion was a Lycra splint. It is like a second skin. We feel that this may be more beneficial and it would be something that I could use throughout the day, which would give me more strength in my hand.I have said that I am interested in the Lycra splinting and am being referred to the department who deal with it, as it is specially measured for each person. I am hoping that this will give me more strength and more confidence to be able to do more with my hands. It may even help with the pain.There is another suggestion too. It is Botulinum Toxin or Bo-Tox!Apparently this has been used for a good few years to help with spasticity & Dystonia amongst other things. The Botulinum Toxin gets injected directly into the muscle. It relaxes the muscle which in turn then relaxes the spasm. It lasts for about three months. I am interested in this too but I want to try the splint first!

All in all it has been quite an eventful few weeks. It is pretty frustrating, but I guess I just have to get used to the fact that these things are going to keep popping up. After all, I'm not getting any younger and I do have MS which leaves me vulnerable to these other issues. Believe me, I am struggling to deal with these things but I am also trying to not let it get on top of me.Holding my head up high and looking forward to the positive things in my life - We go to Centre Parcs in about 8 weeks, with some good friends.........Yay!!

I hope everyone is doing well and enjoying these Summer months!Love & hugsXxXxX

5 comments:

I also have ms, dystonia, vertigo and have had many problems with my eyes including optic neuritis, nystagmus, and currently blehpharospasm which is caused by dystonia. I have generalized dystonia secondary to ms. The dystonia started in my right hand and spread to my right arm and neck. Then it spread to my trunk area and then to my legs and spasms caused my feet to pull inward.I've used botox, but as the dystonia has spread the doses of botox are too high and make me sick. So I take medications for the dystonia which also help the spasticity which ms causes. I also take supplements which seem to help. My cardiologist recommended magnesium 400mg, and I was found to have low potassium. I also take inositol, MSM. As far as medications my neurologist has prescribed baclofen 20 mg 3 times per day, topamax 150 mg, and clonazepam 2-3 milligrams per day to help with tremors and the blepharospasms.

I have quite frequent ms relapses. I was on Tysabri for 2 years, but recently stopped because I tested positive for the JC virus. I'm now back on Rebif and my doctor is also going to start using monthly pulses of steroids because I've had 3 relapses in the past 6 months. I also had frequent relapses on Tysabri, but wasn't able to take steroids as often because of the PML risk. For me I've had testing done for the vertigo by a Dr. of Audiology which showed that the vertigo was caused by my central nervous system most likely ms. I've had vertigo attacks for the past 16 years although they've gotten more frequent as my ms has gotten worse. My neurologist recommended taking ginger root 3 times daily and this has helped although I still have attacks with my relapses. I hope this information is helpful for you. I know it's difficult to manage all of these conditions. It helps to have a support group, a good doctor and a positive attitude. I'm still working full time. Although there are times that I wonder how long I'll be able to continue. The social contact helps me though. I'm a people person. Plus, I have a masters degree and hate to give up my career. My doctor has told me several times to quit and go on disability, but now she says that she admires me. I've explained why I desire to keep working.

I also have ms, dystonia, vertigo and have had many problems with my eyes including optic neuritis, nystagmus, and currently blehpharospasm which is caused by dystonia. I have generalized dystonia secondary to ms. The dystonia started in my right hand and spread to my right arm and neck. Then it spread to my trunk area and then to my legs and spasms caused my feet to pull inward.I've used botox, but as the dystonia has spread the doses of botox are too high and make me sick. So I take medications for the dystonia which also help the spasticity which ms causes. I also take supplements which seem to help. My cardiologist recommended magnesium 400mg, and I was found to have low potassium. I also take inositol, MSM. As far as medications my neurologist has prescribed baclofen 20 mg 3 times per day, topamax 150 mg, and clonazepam 2-3 milligrams per day to help with tremors and the blepharospasms.

I have quite frequent ms relapses. I was on Tysabri for 2 years, but recently stopped because I tested positive for the JC virus. I'm now back on Rebif and my doctor is also going to start using monthly pulses of steroids because I've had 3 relapses in the past 6 months. I also had frequent relapses on Tysabri, but wasn't able to take steroids as often because of the PML risk. For me I've had testing done for the vertigo by a Dr. of Audiology which showed that the vertigo was caused by my central nervous system most likely ms. I've had vertigo attacks for the past 16 years although they've gotten more frequent as my ms has gotten worse. My neurologist recommended taking ginger root 3 times daily and this has helped although I still have attacks with my relapses. I hope this information is helpful for you. I know it's difficult to manage all of these conditions. It helps to have a support group, a good doctor and a positive attitude. I'm still working full time. Although there are times that I wonder how long I'll be able to continue. The social contact helps me though. I'm a people person. Plus, I have a masters degree and hate to give up my career. My doctor has told me several times to quit and go on disability, but now she says that she admires me. I've explained why I desire to keep working.

I realize all this is a few years old, but if you're still around, I suggest you folks might want to go check out www.cpnhelp.org ... you all seem to fit the "well we don't really know what it is, but we'll call it multiple sclerosis" mold.

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About Me

I am 43 years old and I have been happily married to Martin since 1998! We have 2 cats who are our beautiful babies! Oh yes and I have Multiple Sclerosis. I was diagnosed in 2002. I stopped working in 2004 but got a part time job at Asda from 2006 - 2009.
One of my main passions was being involved in theatre, especially singing and I have continued that by organising 3 charity concerts with Martin. We have raised over £6000 so far. I also make my own cards, when the MS lets me!
Welcome to my world......nice to meet you and feel free to join in! :-) XxXxX